Bailey is a Deaf 34-year-old with atypical cystic fibrosis. She has been a journalist, columnist, and novelist for almost two decades, but is also an altruist, feminist and narcissist who likes to ask for “fatty sushi” that’s not on the menu (it’s cream cheese, egg and avocado, respectively). She is artistic director of the body-positive dance company Company 360 in Virginia, as well as a professional dancer, choreographer, and homeschooling mother of two girls. As a formally misdiagnosed mutant, she hopes to raise awareness of atypical CFTR disease and help anyone who isn't genetically in the black or white feel less alone. For more on her activism or art, please see www.catchingbreaths.org.I want to introduce you to my gastric pacemaker. I’m not sure how many people know about her or what she does, and how she may have saved my life on more than one occasion. She wasn’t a fast fix. The girl is a slow worker. But over time, she’s…
By the time you read this, I will be going into surgery. I said that in my last column, which literally was titled “I’m Having a Scary Neck Surgery,” and I just had another one a month before this one, and one three months before that, and another…
“If someone offered me enough money to take a break from work and recover, would I stop working?” I asked myself this the other day. My surgeon had just told me I’m having spine surgery again. I’ve known this for a while — over six months, really — but…
I wrote an entire column this morning and then threw it away. All 800 words — or 790, if I don’t want to annoy my editor. I wrote it, reread it, and thought, “This doesn’t feel right.” It doesn’t feel right because nothing feels right — because something is terribly…
Get the second opinion. I used to think second opinions were for privileged celebrities who dared to defy the doctoral hierarchies of the world. Those who don’t mind being branded as a “doctor hopper” or an “inconsistent patient” because they can pay for whatever bills or bylines that come their…
“I am not doing well at all.” I don’t like saying this. I don’t like saying this because I have children who read things. I don’t like saying this because I have students who see and worry. I don’t like saying this because I don’t like saying this. But…
I have thin privilege. I’ve said this before and I’ll say it again: This is significant because only those who benefit from the system can help break the system — and it needs to be broken. “I saw a comment on Instagram where someone pointed out how sexist the concept…
What you read here is a lie. I don’t always know what life looks like from the outside in, but I know that most of us can never tell what’s really going on in someone else’s. Even when we share a lot online. Even when we write a…
I didn’t write my column last week. It’s the first time I’ve missed a column in months. If I have a surgery or a conflict, I write ahead of time, because one of the best (and most challenging) things about working for a company run by sick people is…
I wish someone actually talked about marriage. And not just marriage to a sick person, though I am one. And not just how to fix a marriage. I don’t want someone to offer advice on what I’m doing wrong (plenty). I just want someone to talk about it honestly. I’ve…
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